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Kampala - After suffering the tragedy of giving birth to a stillborn child nine years ago, Anna Grace Amuko was left with a debilitating condition.

Amuko suffers from obstetric fistula, a hole in the vagina or rectum caused by prolonged labour without treatment, which means she leaks urine uncontrollably. Millions of women in developing countries suffer from the injury, and also endure the social stigma arising as a result of it.

"I'm smelling every day", said Amuko, aged 39, sprawled out on a bed in crowded ward 11 of Kampala's Mulago Hospital.

"My family are not very happy. I have a husband but he says he's tired of it now. People fear living with me. I like always to be with people, but because of this I don't go anywhere, even church, not even to the market."

"I'm sad now because of this", she said.

Dr Mulu Muleta, an Ethiopian surgeon and one of the world's top fistula specialists, said Amuko's predicament is not uncommon.

"I remember a patient who did not see the sunlight", she told AFP at the recent 5th international conference of the International Society of Fistula Surgeons (ISOFS), held in Uganda's capital Kampala.

"She was just sitting in the room, not coming out because the neighbourhood children were stoning her. Her mum was looking after her. We see a lot of such cases."

In Ethiopia, nearly half of the women with fistula are abandoned, said Muleta, who has been working to treat women with the condition for nearly 25 years.

Many women, however, are unaware that about 90% of cases can be repaired, a situation exacerbated by the existence of just a handful of treatment centres in the East Africa and North Africa region.

International NGO Women and Health Alliance International (WAHA), who Muleta now works with, performs about 600 repairs every year at their three facilities. Hamlin Fistula, another organisation, have six centres.

Ethiopia has been doing fistula repairs for over five decades and it's estimated their current backlog at the end of this year will be about 27 000 cases.

"But fistula care in Uganda is relatively young compared to Ethiopia", said Muleta, the new ISOFS president.

Focus on prevention

More than about 200 000 Uganda women live with fistula, but there are 1 900 new cases annually, this is just above the 1 850 women who were treated surgically in 2013, according to a report by the United Nations Population Fund, which finances the majority of repairs through the Campaign to End Fistula.

Uganda now has 23 fistula surgeons and its Mulago hospital has been certified by the International Federation of Gynaecology and Obstetrics as one of the globe's nine specialised facilities for training them, meaning there is less need for surgeons to train outside Uganda, reducing costs.

The East African nation is to also start training surgeons from neighbouring DR Congo, Rwanda and Tanzania in early 2015 to perform the hardest surgery.

But for the time being Uganda only has four specialists able to do this.

"Our country has very few doctors", said Prossy Kyeswa, a Mulago midwife who sees 30 women a week with fistula.

"And women live deep in the villages", she continued, when asked about the socio-economic factors that lead to fistula in Uganda, where an estimated 16 women die daily through childbirth-related complications.

"Others, they don't come to hospital because of money. She fails to get transport."

Amuko, who has not worked for nine years because of fistula, has been operated on four times, albeit unsuccessfully, after hearing of a fistula repair camp advertised by the Ugandan NGO Terrewode.

As the mother-of-three waited to be wheeled into a Mulago operating theatre, she imagined what life without fistula would be like.

"I will be happy, doing my business", said Amuko.

Already this year, scores of women with fistula have been treated across Uganda, some of them during camps to coincide with the ISOFS conference.

"The beds are dry", said midwife Kyeswa excitedly, looking around the ward.

But the focus must still be on making sure fistula does not occur, stressed Muleta.

"It's easier and quicker and cheaper to prevent fistula", she said. "At least we have a goal, achieving is something else."

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